Dear 2018……..uhmmmmm…..’gotta minute?

dearsantaletter-outDear 2018,

Nice to meet you and we look forward to your arrival.
You may not know me fully but I’m pretty sure we both know of each other well enough from others, and I was told to contact you for the things that might be important during this upcoming year in my world; which is a world of diabetes.

I get it.  You’ll have people with long lists regarding the state of affairs here and abroad.  You will have people screaming on both sides of what is correct from their standpoint which they will insist is in the best interests of all…….sort of impossible, I know, but they will insist.

You will also have people asking for incredible mountainous requests for sick relatives and dire situations.  All-in-all, I do not envy you your situation.  Not only will you not make everyone happy, it’s my guess you will make only precious few as happy as they may want.  Powerful is the individual who recognizes that they cannot do anything about what enters their world but it’s what they do with what comes along that creates the path they walk.  We are each faced with that task.  Life is life; and no matter where we are in this world…..we are given life to deal with and manage.

With all of this in mind, it’s also my understanding that you take requests. It has been made clear to me, 2018, that you are not Santa Claus but that request can be made and you will sort through and figure out what is best and that asking is completely encouraged.

Okay…….so here we go.  This is my request for our diabetes world.  Others may chime in as needed.

First and always, I want a cure.  I’ve been asking this for some time and although I have not been one of those who point and say they have been promising it within the next five years (who are those people anyway?), I think it’s time.  Or, at least, some REAL significant progress toward that end.  Some clinical (human) trials in kids…..something promising please.

We also need some stability in the insulin world when it comes to pricing.  Either allow some of the cases to come to trial that make/prove definitive and serious allegations to force lower costs, or have someone come up with a generic brand that will shake the foundations of those who think they control all costs—-the prices are too high, 2018, please look into this matter.

Please help us make a REAL dent in our journey to stop the missed diagnosis of T1D.  No one should die or be missed diagnosis that in turn causes major havoc in people’s lives.  IT’S JUST SO AVOIDABLE, 2018, it’s almost ridiculous.  Thank you for the continued efforts of so many—-it’s MAKING a difference but we need to really make this a national initiative.

Health care costs.  Okay here is the deal, us in the diabetes word ARE NOT THE ONLY ones asking about this 2018.  YOU HAVE GOT TO KNOW BY NOW how important this issue is for so many causes, so many people, and so many reasons?  A group of fat cats in our Nation’s Capitol can no longer be allowed to merely make changes without fully understanding of what the impact will be…..it’s a mess 2018, please both tend to, and fix, this situation.

Management tools.  2018, I am not just  referring to a device that reads blood sugar and dispenses insulin; I’m talking about all management tools.  There needs to be a healthy array of available equipment and not controlled by just one or two companies.  This just makes no sense.  Never before have people (patients, loved ones of patients) been so nervous that what is available today will not be available tomorrow.  Medicare and Medicaid need to cover what is needed and we all need to know that what is needed will always be available.  It’s just not fair.

2018, these are all practical and needed request and understood, they are all tall orders.  But I have faith in you and believe in you.  From the fiasco of diabetes issues 2017 left behind, my hope is that you are better, stronger, and more aware of how to navigate the waters-of-need for all those who do not want to just live with diabetes, but thrive with it.

Good luck 2018, we be in touch to see how you are doing.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

The Night Before D-Christmas—2017

Santa Claus magic dustWith special apologies to Clement Moore. I present what has become a DiabetesDad tradition……an updated, ‘Twas the Night Before D-Christmas for 2017

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The meters, CGMs, and supplies were put away with such care,
In hopes that Santa would bring the cure with him this year.

The children were nestled from head to their feeties,
While thoughts in their head were no more diabetes.
And mamma in her ‘kerchief, she prayed for the cure too,
A dad still wonders what else could he do.

Remembering this year; and things we did see,
Like MiniMed’s Hybrid they call the 670G;
Away to the D-Community to see who was a hero on fire,
It’s those who battle T1D who really inspire

As costs continue to rise and wallets get thin,
We fought hard for lower costs of insulin.
The community raised voices loud and concise,
Costs are too far and need to be lower in price.

It was tough this year as great ones left out the door,
Just some were Keith Campbell and Mary Tyler Moore.
Their voices were loud and their voices were clear,
They will surely be missed, wish they could stay near.

Others will take the lead and we will all see
Better products, more work, and good advocacy.
Better pumps, insulin, and CGMS by the score,
There’s plenty coming and we’re screaming for more.

Although some tough times happened and we were sad,
Animas closing, costs too high and true, we were mad.
But onward we go staying positive all the way,
There’s so much to do, and it all starts today.

Fighting for many and trying to be fair,
Coverage for one, coverage for all, even with Medicare.
Human trials, products, not just for our self,
Diabetes tattoos, even CGM for Elf on a Shelf.

Hurricanes were cruel where they would roam,
Far away sure, but also at home.
Many worked hard helping where they could,
So many doing and helping as they all should.

Many stepped up to help and grabbed at the ball,
Helping some was no good, it had to be all.
Helping others and giving so very deep,
Hours and days they all went and went without sleep.

When you look outside at the fresh fallen snow,
so many are doing and so many you don’t know,
Think of those who inspire and soon you’ll see,
Things will move forward and continue to be.

Life is not the greatest fighting this disease.
Continue to ask as you drop to your knees
That things will get better and rightfully quick,
Good things to come, and not all from St. Nick.

So listen carefully as you think what needs to be done,
If you have an idea, take it and run.
Don’t leave it to others; it’ll be just a few,
“Don’t do nothing” is what you really must do.

And if you think you’re done, tired, and feeling sort of sore,
Think of your loved one with diabetes, it’ll make you do more.
And if not for you, it will be for their sake,
We won’t stop at all till they get a break.

And then, in a twinkling, one day we’ll hear on the roof,
The prancing and pawing of each little hoof.
And the only thing needed in Santa’s bag for sure,
Is when diabetes is gone because of a cure.

So we will all continue to work, the ‘where’ is up to you,
But you have to make the decision on something you’ll do.
And one day we’ll scream and exclaim, “diabetes is gone from sight,”
The Happiest Christmas ever, and to all a good-night!
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Annual Tradition Continues—–Your Child and a Personal Santa Letter

santa-from-videoSANTA CLAUS CAN PEN A PERSONAL NOTE TO YOUR CHILD THIS CHRISTMAS
Jolly holiday 7th Annual fundraiser benefits Diabetes Research Institute Foundation
NOTE: Your child does not have to have diabetes to receive a letter from Santa (cute video—click picture)

Yes, Virginia (and Emma, and Maria, and Max, and Willie…), there is a Santa Claus. To prove it, Ol’ Saint Nick himself will send a personalized letter – complete with a North Pole stamp – to any child, in any part of the world for a minimum donation to the Diabetes Research Institute Foundation. This jolly holiday fundraiser is up and running and you can click this SANTA CLAUS to learn how to send a letter and make a donation. Your child receiving a personal letter from Santa is certain to light up faces brighter than the star on the tree. And of course if you do not know of anyone who would want a letter from Santa….you can make a donation to just help the DRI continue their collaborative efforts to end diabetes once and for all.

Click here to learn more about the Diabetes Research Institute Foundation.

The personalized letters, which can be requested by parents, grandparents, aunts, uncles or any other family member or friend, can include all sorts of information; like a reference to any toy, game, iPad or techno-gadget on the child’s wish list or even mention something about their pet. Santa can even encourage them and that he knows how well they have been trying to manage their diabetes as well. The fundraising campaign is open to all families everywhere, not just those affected by diabetes.

To get all of the letters out to children by Christmas day, a legion of Santa’s “elves” are standing by around the country, according to volunteer chairwoman Marie Jarcho.

“We had a tremendous response the last seven years. This is a wonderful and easy way to brighten a child’s Christmas and they loved it. The more information that parents or others supply, the more personal Santa’s letter will be,” she said. “…… it is my sincere hope that people will give what they can to help the Diabetes Research Institute find a cure.”

After the debut event, one mother wrote that her child was so thrilled with the personalized letter that she slept with it every night until Christmas. The DRI Foundation is hoping for an even greater response this year.

To send a child a letter from Santa Claus, JUST CLICK HERE or you can click the picture to see a really cute Santa Video about the personalized letters. The deadline for participation is midnight on December 11th in the USA and December 6th for any area outside the USA.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Halloween and Diabetes….Be Afraid…..Be VERY Afraid……REALLY? Nope. Boo.

Insulin PumpFrom three years ago and updated but still a treat (get it?)…..enjoy.  Happy Halloween.

Within the next week will be Halloween. Halloween means so much to kids. Our kids with diabetes are no exception. I remember when Kaitlyn was younger and many neighbors bought stickers and toys for Kaitlyn; “…I did not know what to get for her”, Was a common response.  Not really necessary, but we just said thank you for their thoughtfulness…..and they were very; thoughtful.  People can surely be wonderful.

We were discussing this weekend, over coffee, that each year there was no doubt with all of the walking that Kaitlyn would do that ‘going low thing’ and it would not only occur; but almost always at the exact same block each year. (Spooky, huh?)  She would carefully choose something out of her bag full of treats (of course juice boxes and ‘stuff needed’ were readily available ‘just in case’—but letting her choose something from her Trick or Treat bag…why not?). We would wait a few minutes and continue on. Fun and frights continued.

By time she was out on her own in junior high school (in an era of no CGM like DEXCOM may I add) she was pretty well versed on how the drill worked on Halloween. In a recent conversation neither Jill nor I could remember any major adjustment on this date (and remember prior articles of mine stating Kaitlyn was considered as ‘brittle’, which translated meant she was extremely tough to control….it was a phrase we hated). On this day our kids strive and want to be just like all the others kids…….AND THEY SHOULD BE.

Let them.

I remember many conversations from people over the years who do not live with diabetes; how much Halloween must be a ‘disaster’ for us, having a child “who cannot eat candy”. People thought that we would deprive our child of this incredible right-of-passage. Those of us ‘in the know’ know better, don’t we? 😉

If you do not know….you should learn how close to normal you can make this day. Our kids are not driving close to a cliff during this day.  Don’t treat it as such.   Yes, be smart but every time you feel the word ‘no’ coming on……change it to making it about choices.

Of course we would control the candy; some gave money in exchange, some put the candy outside for the GREAT PUMPKIN to take and exchange for a toy; but we always controlled what the kids ate, what ALL THE KIDS ate; and we went through it all like every other parent did each year (you would be surprised how much leeway THIS gave us on removing ‘stuff’, think about it).

We all do/did ‘Halloween’ things.

There are many things that you can find online about kids, diabetes, and what to do. Today I want to check in with where YOUR head’s at.  Parents? You should not be afraid (pun intended) of this day and you should spend the time enjoying your kids while they enjoy the day.

Diabetes never stopped us on Halloween, never missed a day in all those years; and it should not stop you either. Go and enjoy. This is a holiday for kids to enjoy and with a little knowledge and a little ‘smarts’, the only frightening thing about the day should be at your front door when the doorbell rings.

Be afraid……..be very afraid? Nah…….enjoy; Halloween is nothing to ‘spook’ you.
…….and as a side note; Kaitlyn sits as an RN to take her CDE test in January.  Yes my dear colleagues/parents-in-arms…….They. Can. Do. Anything.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

NEWSBREAK: RYAN REED WINS IN DAYTONA…..Diabetes at 187 mph!!!!!

Ryan Daytona 2017I have no voice from screaming at the TV.
Car accident after car accident.
Two involving Ryan.
But still, he kept coming back.
And kept coming back.
In a race that went into overtime….
Ryan Reed won at Daytona tonight in one of the longest races ever on record.

BAM TAKE THAT DIABETES.

My heart was pounding through my chest as I screamed at the television watching this young man who not only has won over an entire diabetes community….today he beat three powerhouses with incredible driving to win….and win over the racing community with INCREDIBLE DRIVING………and won big in Daytona.

And yes he mentioned the wonderful folks at Lilly who sponsor him and yes, he mentioned that it is a big win for people like him with T1D.  He again showed poise, grace, and deflected all attention to his team.  Congratulations to his family, his team, and Lilly Diabetes for sticking with a winner.  Nice job, all.

But it’s Ryan at the wheel.  It’s Ryan on the gas.  It’s Ryan checking his blood sugars at 187 miles per hour.  It’s Ryan at the checkered flag.
LIVING with diabetes. DRIVE that home to your kids.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

What If Insulin Was Not Available at ALL??? To Some it’s a Harsh Reality.

Rose Spare a Rose---Save a childIn today’s climate where any opinion seems to be a wrong opinion……….to someone; would you like to do something to feel just a little better inside?  I think we all could say, “I wish I had a little more.”  “Life would just be a tad easier if…….”  I think we all have said that at some time or another and, perhaps, some even say it today.  What I DO KNOW without a doubt is that there are children in this world who will go to bed tonight and not know if there will be an insulin shot waiting for them tomorrow…….to stay alive

Sort of puts much into perspective doesn’t it?

In 2013, some members of our very own diabetes community came up with a wonderful idea called “Spare a Rose, Save a Child“.  Simply put; this year for Valentines’s Day, spare one rose, give one less, and send the cost of JUST THAT ONE ROSE ($5.00) to help a child get what they need dealing with their diabetes.

Did you know that just $5.00 could be a month of insulin for one child?  Well, it can be.
In fact 1 Rose= $5.00 enough for one month
2 Roses=$10.00 enough for 2 months
3 Roses=$15.00 enough for 3 months
…..and so on.

So think about it.  It’s my opinion that you will feel pretty good about doing so………I ‘m pretty sure that’s an opinion all would be in agreement.  Click here……make a difference. Spare a Rose, Save a Child.

I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

 

Good-Bye 2016….and Thank……YOU!!!!!!

calendar-page-offWell tear the page off the calender, 2016 is history.  Much has surely happened this year and as I reflect on it, I realize that so much good happened in the year.  I know many feel differently, and that is fine as they are entitled, but I’ve never been one to stay focused on one item or one event.

I survived being at 9/11, I survived my child being diagnosed with diabetes, I have survived losing a brother (in law), a father, a father and mother-in-law who I cherished, a second child being diagnosed and an entire list of items that will depress you to know end–and many people over the years have been in office who I did not want or who I wanted…..and I will be danged if whatever this year bought will make me react any differently.

The sun will rise tomorrow and with it a new day. And it is THAT way in which I live.

I will choose the GREAT things that happened over the year in the battle against undiagnosed Type 1 Diabetes.  I’ll cherish Beyond Type 1, Insulet, dPac, Susan Weiner, Kim May, Michelle Berman, Debbie Healy, Bennet Dunlap, Little Reegan’s Family, Kycie’s Family, Elizabeth Stein, DiaBEAT THIS!, and those who have stepped on the gas pedal and chose to share their lives to end these occurrences and, in some cases, when they were even victims themselves.  I’m grateful to the many who gave a platform to spread the word.  I’M GRATEFUL TO THOSE WHO EVEN HUNG A POSTER TO SPREAD THE WORD.

I’ll cherish those advancing the better treatment for those who live with diabetes every day.  I’ll cherish those organizations who continue to help people, advocate, and spread the word.    I’ll cherish those who despite great odds, continue in that search for a cure. I’ll, personally cherish, a new granddaughter, an engaged daughter, a move to a new home in a new state, and always my wonderful family.

And I will always and in all ways cherish you.  You who inform me, you who challenge me, you who teach me, you who believe in just ‘not doing nothing’, you who choose to make a difference, you who are my brothers/sisters-in-arms in a battle none of us want to be part.

If 2017 is not what you want it to be, MAKE IT what you want it to be.  We cannot do anything about what may come our way but we can certainly control how much it impacts us.  May 2017 be happy and healthy and may your inner wishes come true. Thank you for being part of my 2016, I look forward to what 2017 may hold for all of us.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Twas the Night Before D-Christmas 2016

santa-moonWith special apologies to Clement Moore.   I present a tradition……an updated, ‘Twas the Night Before D-Christmas for 2016

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The stockings were hung by the chimney with prayer,
In hopes that Santa would bring the cure with him this year.

The children were nestled from head to their feeties,
While thoughts in their head were no more diabetes.
And mamma in her ‘kerchief, she prayed for the cure too,
A dad still wonders what else could he do.

Remembering this year; the so much good and fun,
Seems monthly there was news at Beyond Type1.
Away to the news to see who was a hero of fire,
It’s those who live with T1D who really inspire

As costs continue to rise on everyone’s supply,
So many wonder how they’ll get by.
D-bloggers continue to write of these capers,
It certainly can’t be left to all the newspapers.

While many wrote of Santa’s goodies in his sack
Many doing much more like those from dPac.
To those with diabetes these really are not funny,
You’re playing with lives; it’s not about money.

As parents search for the docs and schools that really do care,
So much about this disease just doesn’t seem fair.
But as we turn and realize the continual fear,
I have some wishes for so many during this year.

When you look outside at the fresh fallen snow,
Or out at the sea where cold you don’t know,
Think of those who inspire and soon you’ll see,
Those things have changed in the past and will continue to be.

Innovations like getting supplies to those in foreign lands,
There is Life of a Child, IDF, and a Foundation of Hands.
There were great ideas to help our kids remember,
Of those in the fight like Project Blue November.

We work very hard for a managed d-Life to be,
And there is much help like at CWD.
There was JDRF/Medtronic approved hybrid closing the loop,
And ADA’s Dancing Steps was really a scoop.

There are innovations and those like Tide Pool
And DRI’s BioHub news continue to gain fuel.
There are so many camps that continue to say,
Spend a week with us for an even better today.

From Faustman, ViaCyte an IRB survey from Glu,
Stopping missed diagnosis to end candles of blue.
So as the year ends and criticisms comes quick,
Good things will come, and not all from St. Nick.

So listen carefully as you think of all that is run,
There is so much more work that needs to be done.
Don’t leave it to others; it’ll be just a few,
“Don’t do nothing” is what you really must do.

And if you think you’re done, tired, and feeling sort of sore,
Think of your loved one with diabetes, it’ll make you do more.
And if not for you, it will be for their sake,
We will stop all when only they get a break.

And then, in a twinkling, one day we’ll hear on the roof,
The prancing and pawing of each little hoof.
And the only thing needed is Santa’s toy bag for sure,
When diabetes is gone because of a cure.

So we will all continue to work, the ‘where’ is up to you,
But you have to make the decision on something you’ll do.
And one day we’ll scream and exclaim, “diabetes is gone from sight,”
The Happiest Christmas ever, and to all a good-night!

I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

For One Brief Moment

christmas-dayFor one brief moment may you find the peace and solace you need to enjoy those around you.
For one brief moment, although you will never forget pain, be allowed to focus on what you DO have around you that brings you joy.
For one brief moment, may diabetes behave, to allow you to see the wonderful people who have come into your life and have helped you on this journey.
For one brief moment, may you hold your family close, knowing how brutal this life around us can be.
For one brief moment may you find the peace necessary to enjoy the holidays and understand what that baby born in a manger represents.
For one brief moment, should you not believe as I do, may your faith surround you with the hope needed to enjoy your holidays.
tomorrow will come.  The next ‘thing’ in our life will become present.  The sun will rise and with it may we realize that our similarities far outweigh our differences.
Happy Holidays to all and thank you for being……..you.
Much love always.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Oh…..It’s Butterfly Kisses…..My Baby Girl is Engaged!

kaitlyn-job“I think we have been apart too long.  I really just cannot exist without her in my life.”  And in an instant, all of the concerns about,; will he take care of her diabetes, will he make sure she is okay, will he care for her, will he…..will he……willl he???????
I answered him, “You not only have our blessing, we would be honored.”

And in those few words, I felt all of the energy run out of my body, my precious little girl, my baby girl, the one who “Daddy’s-Little-Girl” describes…..was being given to another man to become one.

Just like that.  Just that quick.  After 26 years 9 months and 13 days……my daughter would leave the shadows of her mom and me and become engaged to become one in another’s life.

He’s a good man.  He’s been part of our lives for a long time.  We have watched the two of them grow……apart….and together.  She’s now a nurse, he graduates the Police Academy early next year.  They will be fine.

My little girl.

Was it not just yesterday she had to climb to get upon my knee.
Was it not just yesterday we were rushing her to the hospital and diagnosed with diabetes.
Was it not just yesterday that I wiped her tears.
Was it not just yesterday that her feet were on top of mine as we danced.
Was it nt just yesterday that we started with butterfly kisses.
Was it not just yesterday that I was superman and could do anything.
Was it not just yesterday that I tucked her in at night and sang to her.

My little girl.

No man has been luckier than I to have such blessings.  Wedding plans are looking toward early 2018.  And at that time I will walk her down the aisle, I will lift her veil, I will shake his hand and pass her hand over to his.  She will change her name on that day.
She’ll make a promise,
And I’ll give her away.
Standing in the bride room
Just staring at her,
She asked me what I’m thinking,
And I said “I’m not sure,
I just feel like I’m losing my baby girl.”
Then she leaned over and gave me

Butterfly kisses, with her mama there
Sticking little white flowers all up in her hair
“Walk me down the aisle daddy, it’s just
About time”
“Does my wedding gown look pretty Daddy?”
“Daddy don’t cry”
Oh with all that I’ve done wrong,
I must have done something right
To deserve her love every morning,
And butterfly kisses
I couldn’t ask god for more, man, this is
What love is
I know I’ve gotta let her go, but I’ll always
Remember
Every hug in the morning, and butterfly kisses

I love you my baby girl.  Congratulations on your engagement.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.